Wednesday, September 29, 2010
BITE ME
Did you know?
Anger and sadness increase pain
in women with Fibromyalgia.
La Dee Da,
La Dee Da.
So I read this article because I was interested in the findings. First of all, anger and sadness increase pain in women with and without Fibromyalgia. As far as I'm concerned the fibro was just a way to get into the headlines. They could have just stated that anger and sadness increase pain. I'll buy that one. Negative emotions do have an impact on our stress levels and our bodies. It doesn't take a rocket scientist to figure that one out. Maybe I'm just being pissy but these kinds of articles irritate me to no end.
First of all, let me address cognitive behavioral therapy which they think is a very promising avenue in the management of Fibromyalgia.
BITE ME.
Behavioral therapy is supposed to change the way your mind influences your body. In other words, when you focus on something wonderful you can change the way your body reacts to the pain.
BITE ME.
I have a high tolerance for pain. I am not unfamiliar with techniques that I've used in the past to breathe my way through painful situations. No, I'm not talking about Lamaze. I've had ankle sprains and the pain that I experienced was off the wall. Through deep breathing and focusing on something else I was able to tolerate excruciating pain. That is something totally different than what I've got going on here.
You know what's coming. Chronic pain that you have to deal with on a daily basis is becoming chronic acute pain. It's the pain that is at an 8 or above on the pain scale. You focus, you breathe, you get in the bathtub, you cry and scream and all the while you're praying that it doesn't get worse. This isn't a momentary re-focus. This is the kind of pain that isn't affected by the medication. This is the kind of pain where you just want to be knocked out. This is the kind of pain that you CANNOT manage by behavioral therapy. Believe me, we know because we've all tried it. If it worked we'd be doing it every available minute so we could get our lives back. Every single one of the women I know do everything they can to rise above their pain and deal with their everyday lives.
They say the good thing about this kind of therapy is that it has none of the side effects that can occur with other management tools, such as pain medication. Cognitive behavioral therapy isn't what comes out of the pain fairies wand and makes it disappear. It sounds to me like they are worried about dependence on opioid pain medication. The people who depend on these medications to deal with chronic pain do not abuse them. They need them to function in this world.
Tell me they really think that this therapy could take the place of medication. I'd say they must be on the very drugs that they don't want us to take.
It makes me angry when I see articles like this. Gee, you think my pain will increase?
Breathe.
Just breathe.
Was it as good for you as it was for me?
Tuesday, September 28, 2010
MOTHER NATURE DIDN'T GET THE MEMO
Evidently,
someone didn't get the memo.
It's fall!
Not summer!
You know, those with chronic illness have enough to deal with on a daily basis. We are at the mercy of so many variables; weather being just one of them. In Las Vegas, because the heat of the summer is so unbearable, you really look forward to September because the heat will finally break and it's nice to finally get some decent weather.
No such luck this year.
I don't do well in the heat. Well, let's face it, I don't do well in the heat, the cold, the rain and in humidity. That doesn't leave much does it? I'm sucking down every vitamin that I can think of and the only plus of that is it doesn't leave room for food. Before we get a huge hooray, and nope, I'm not losing much weight.
I'm finding my symptoms have been wandering lately. It is always in my hands; that hasn't changed, however, the muscle spasms have increased in intensity. I've looked at my diet to see if I've eaten anything that would cause the increase in spasms but I'm fairly consistent in that area. Could it be the heat? I've looked at the nightshade issue but, for me, tomatoes don't cause any problems or increase in pain.
Could diet really have an effect on pain?
In my case, I'm not so sure. If this is a neurological disorder then stress and environmental factors would have more of an impact than diet. I'm not saying that a healthy diet isn't important, I just think everyone is different and reactions to certain foods are also different for every person. Allergies, intolerances, everyone reacts in a different way. I don't process sugar well and, for me, I shouldn't eat it. I love it but I shouldn't eat it. To lose weight I need a more protein based diet but in my daughter's case she needs carbs included to lose the pounds. Like I said, every body is different.
So it's back to hiding in the house because I hate the heat. I hope next week is better and there is a break in the 100 plus degree weather!
I'm going to sleep.
Wake me up when the cold weather arrives.
I'm finding my symptoms have been wandering lately. It is always in my hands; that hasn't changed, however, the muscle spasms have increased in intensity. I've looked at my diet to see if I've eaten anything that would cause the increase in spasms but I'm fairly consistent in that area. Could it be the heat? I've looked at the nightshade issue but, for me, tomatoes don't cause any problems or increase in pain.
Could diet really have an effect on pain?
In my case, I'm not so sure. If this is a neurological disorder then stress and environmental factors would have more of an impact than diet. I'm not saying that a healthy diet isn't important, I just think everyone is different and reactions to certain foods are also different for every person. Allergies, intolerances, everyone reacts in a different way. I don't process sugar well and, for me, I shouldn't eat it. I love it but I shouldn't eat it. To lose weight I need a more protein based diet but in my daughter's case she needs carbs included to lose the pounds. Like I said, every body is different.
So it's back to hiding in the house because I hate the heat. I hope next week is better and there is a break in the 100 plus degree weather!
I'm going to sleep.
Wake me up when the cold weather arrives.
Friday, September 24, 2010
SPRINGS AND MUSH
This is my brain.
The good thing about Fibromyalgia is that it doesn't kill you.
The bad thing about Fibromyalgia;
it doesn't kill you.
I have to say it was a little tough after the blog carnival. Standing that close to the fire and stirring up thoughts that you try to keep at bay was uncomfortable. I had to shake off the mood and I wasn't doing a real good job of it. All these feelings were bubbling just underneath the surface. I figured I'd put on a real sappy movie and forget about it. It didn't work.
My brains felt like mush.
I still can't seem to get it together. I feel like I'm a bubble off. Then to top it all off my muscles are ganging up on me and trying to stage a rebellion. Everything is jumping and twitching and driving me crazy! I've got one more hour and then it's more muscle relaxers. Why aren't they listening tonight?
I'm a survivor. I always have been but there are times that I wish this disease would put me out of my misery. Tonight is one of those times. It feels like a spring is being wound up and tightened just until the point it is going to release. When it releases the tightening starts again immediately. A baseball bat beating the crap out of me would feel better than this does.
On top of it all the fog has rolled in with a vengeance. I couldn't seem to remember anything today. When I went for my morning walk I not only forgot my cell phone but I had to drive around the block twice to make sure I shut my garage door. Also, I usually take a bottle of water that I've put in the freezer so I can drink it as it melts. This way the water stays very cold. I really hate room temperature water. So what did I do? I forgot to put a bottle in the freezer last night. I was stuck taking a bottle of water with me that was warm by the time I got done with my walk. Yuck!
I also can't seem to keep my thought processes moving. They start, then stop and then I can't remember what I wanted to say or what I was evening talking about for that matter. All in all, it has been a very frustrating day. Can you even imagine how I'd remember everything that has happened in this last year and a half if I hadn't been blogging? I can't remember what I did ten minutes ago let alone eighteen months ago.
I must be starting one hell of a flare. I've stopped typing four or five (I can't remember) times tonight because my hands are aching. I think I'm going to slug down another muscle relaxer and call it a night. I'm going to walk in the morning and if I don't try to sleep I'll never make it there. I really am committed to this for a couple of reasons.
1. I am waiting for this to help me with the pain.
2. I would like to look decent for my daughters wedding.
I'm tired of feeling like a big, fat lump. I need to lose 20 pounds. My (gasp!) 40 year high school reunion is in a month and I would like to lose a little of this extra weight. I know everyone has aged and probably put on a little weight, but that doesn't matter. I want to look good! If I have to slug down a few pain pills to get into a pair of my gorgeous heels that have been collecting dust in my closet, so be it. I know I'll probably regret it but I'm going to do it. Plus, if I add a few inches on the height I'll look skinnier. I haven't worn them in so long I'll probably trip and look like a real loon. It should be a real interesting evening and will probably make a great story!
So I'm on a mission.
That too could change by the morning.
I probably won't remember it.
I must be starting one hell of a flare. I've stopped typing four or five (I can't remember) times tonight because my hands are aching. I think I'm going to slug down another muscle relaxer and call it a night. I'm going to walk in the morning and if I don't try to sleep I'll never make it there. I really am committed to this for a couple of reasons.
1. I am waiting for this to help me with the pain.
2. I would like to look decent for my daughters wedding.
I'm tired of feeling like a big, fat lump. I need to lose 20 pounds. My (gasp!) 40 year high school reunion is in a month and I would like to lose a little of this extra weight. I know everyone has aged and probably put on a little weight, but that doesn't matter. I want to look good! If I have to slug down a few pain pills to get into a pair of my gorgeous heels that have been collecting dust in my closet, so be it. I know I'll probably regret it but I'm going to do it. Plus, if I add a few inches on the height I'll look skinnier. I haven't worn them in so long I'll probably trip and look like a real loon. It should be a real interesting evening and will probably make a great story!
So I'm on a mission.
That too could change by the morning.
I probably won't remember it.
Thursday, September 23, 2010
Monday, September 20, 2010
A LIGHT IN THE DARKNESS - BLOG CARNIVAL ROUND 2
There is strength of the body.
But when depression strikes,
it takes a true strength of faith and will
to climb out of the darkness
into the light.
But when depression strikes,
it takes a true strength of faith and will
to climb out of the darkness
into the light.
Jolene at Graceful Agony has chosen a subject that is, unfortunately, near and *dear to those who's life has been touched by chronic pain and illness. As you can see the asterisk next to the dear because there is nothing dear about depression. It's a bone chilling experience that leaves us wondering and doubting if we will ever be the same again. Every time that cold, bony finger touches us and scars us it takes every bit of faith and strength that we have to climb up that ladder and back into the light of day.
The women that are a part of this group and who wrote about their own personal experiences are truly courageous. I know there are others who didn't participate in this round who bare their souls on their posts and have been touched by depression as well.
Admitting depression doesn't show weakness, it just admits that we've been strong for too long.
Pain's evil touch makes us doubt our faith and our strength. Maryn's post, "Whisper me softly." speaks to me. I've read and re-read this post countless times. Each time I feel so strongly how depression is just a whisper away and that fighting it is the only option I have. I tend to hide and deny. Other people fight it in their own way. No matter how you fight it's a fight that will last a lifetime and we must be cognizant of that fact.
It is the wolf in sheep's clothing. We must stay vigilant and aware. It will try anything it can to maneuver itself into our mind and heart. It will tell us this fight isn't worth it. It will beckon us over to his side with the promise that the darkness will soothe our souls more than the light.
It is the wolf in sheep's clothing. We must stay vigilant and aware. It will try anything it can to maneuver itself into our mind and heart. It will tell us this fight isn't worth it. It will beckon us over to his side with the promise that the darkness will soothe our souls more than the light.
We must always remember that he lies.
I hope that we will all read the posts and take them to heart. They are written by some amazing women who I'm proud to call my friends.
Saturday, September 18, 2010
ROSE AND THE TERRIBLE, HORRIBLE, NO GOOD, VERY BAD DAY
It started out bad.
It didn't get better as the day went on.
The prognosis isn't good for the rest of the evening.
Thanks, however, to Judith Viorst for a magnificent description of my day.
Thanks, however, to Judith Viorst for a magnificent description of my day.
Let me give you a little overview of the day. I don't know why I'm constantly surprised when I put my feet on the floor in the morning and it feels like razor blades are embedded in them. I'm used to the stiffness that doesn't go away until mid-morning; I can deal with that. As I hobble to the kitchen to make a concoction that kind of resembles coffee, I remember that I left my thyroid medication by the bed. I try to take it first thing in the morning because if I don't, I'll forget. So I hobble back to get the medication. Unfortunately, my dog has gotten up and he wants to be outdoors. So as I walk on what feels like pins and needles, I put Mr. H outside and then start my trek back to the kitchen.
Crap.
I forgot the fricking medication AGAIN.
Screw it. I'll take it later.
I'll live to regret those words.
So I start my coffee ( and I use the term loosely) and get the non-fat creamer and Sweet and Low so that it will resemble light brown milk. My daughter visibly shudders when she watches me make coffee! As I get the cream out of the refrigerator it slips out of my hands and suddenly, splat! Yep, I've got cream all over the floor. I am so irritated because to mop this floor literally puts me down for days. The dog comes in looking like he hit the lottery and at this point I let him lick the mess up off the floor. He doesn't digest milk well, so I know I'll pay for this later. I throw practically a whole roll of paper towels on the floor and wiped the cream up. At this point, I don't want the coffee anymore. I head to the fridge and get a diet coke.
I figure I'll go to the gym. I don't know why I do it. Everything I read says I need the movement and that it will help with the pain. So far it hasn't helped at all. I'm wiped out after I walk and I come home and go to sleep. Now let me explain the trip to the gym.
I get in the car and pull out of the garage. Then I look down and I pull back into the garage. I go inside and get my phone and the gym bag. I can't remember anything today! Okay, I'm ready to go now. No, I'm not. I have to take my pain pills otherwise I won't be able to walk. If I don't take it before I get there it won't kick in. Great. So I stop the car and take the pain medication.
NOW I'm ready to go.
By the time I get to the gym I'm exhausted. I just want to go home and put the covers over my head. Maybe I just should have stayed in bed today. It isn't looking good so far but, I keep going and make to to the gym and walk.
I hate looking a women older than I am who are practically running. I am so envious of people that can walk without pain. As I walk I realize how much I took for granted. I took my health for granted, my body, my work and my finances for granted. I just wish I could go back a couple of years before the accident. It's very sobering and depressing to realize that you can NEVER go back. But, I hobble on......
I get home and get back into bed and put the pillows around my head and that is where I have been all day and night. It's just one of those days where my mood has gotten worse with every passing hour. It's so frustrating to forget everything. I tried using the weekly pill dispenser but I forget to fill it and even when I do remember to fill it, I forget to use it. I stayed a couple of hours in the tub just to see if I could shake off this mood.
Nope.
It's still here.
If I could sleep I'd say tomorrow will be a better day.
But I probably won't sleep either.
By the way, I forgot to take my thyroid medication today.
NOW I'm ready to go.
By the time I get to the gym I'm exhausted. I just want to go home and put the covers over my head. Maybe I just should have stayed in bed today. It isn't looking good so far but, I keep going and make to to the gym and walk.
I hate looking a women older than I am who are practically running. I am so envious of people that can walk without pain. As I walk I realize how much I took for granted. I took my health for granted, my body, my work and my finances for granted. I just wish I could go back a couple of years before the accident. It's very sobering and depressing to realize that you can NEVER go back. But, I hobble on......
I get home and get back into bed and put the pillows around my head and that is where I have been all day and night. It's just one of those days where my mood has gotten worse with every passing hour. It's so frustrating to forget everything. I tried using the weekly pill dispenser but I forget to fill it and even when I do remember to fill it, I forget to use it. I stayed a couple of hours in the tub just to see if I could shake off this mood.
Nope.
It's still here.
If I could sleep I'd say tomorrow will be a better day.
But I probably won't sleep either.
By the way, I forgot to take my thyroid medication today.
Thursday, September 16, 2010
DENIAL AND ACCEPTANCE
It is said,
that the truth will set you free.
That may be true,
but in my case,
it will first make me miserable.
that the truth will set you free.
That may be true,
but in my case,
it will first make me miserable.
There are five stages of grief and it seems that I am on this never-ending cycle. I never quite reach the last stage of acceptance. I'm great at denial, super at anger and bargaining and then, when I hit depression, I start the process all over again. Intellectually, I know the truth about my body but I can't take it to heart.
It took me a long time to get out of the denial stage. I have never wanted to believe that I'm disabled by this disease. To believe that I'm disabled conjures up an image of a woman bent, gnarled and ravaged by this unreal turn of events. In my heart I know that isn't true but I can't seem to shake the image I have of her. Also, I truly believe that if I deny Fibromyalgia, I can somehow escape the icy clutches of pain. No, it hasn't worked but I'm caught in the loop of these stages and it always starts in denial.
When I woke up this morning and put my feet on the floor, I knew it wasn't going to be a real good day. Plus, not only did I have the pain in my feet but I felt like I'd been run over by a truck. Where did this overpowering fatigue come from? I feel like every last bit of energy has been drained out of me. I do get tired very easily but this is a different kind of fatigue. I can hardly keep my eyes open. I'm even afraid to drive because it's that bad.
So what did I do?
I spent the day in bed and slept off an on.
When will I stop bargaining with God and stop getting angry? I am just so sick of being sick and tired. I hate feeling like I need to vent instead of being positive. Have you ever had days where you just don't feel like being positive? Well, this is mine. I'm tired of my hands and feet hurting so bad. I'd love to have a massage but my body aches. I started watching The Apprentice but I can't seem to follow it. How dumb is that? I can't even follow my own sentences today.........
Maybe part of the feelings that I have today are because I am so sleep deprived. I've been sleeping, on average a couple of hours and then waking. I don't get enough sleep and that, in itself, causes the pain to flare beyond belief. I would love to sleep for a full night like I used to....again, another pipe dream.
When will I get to the point of acceptance? I know I keep saying this but I just can't seem to get there. I want to and yet, I'm afraid to accept this. A part of me needs to keep fighting and the other part of me is so tired. One part is afraid I'll knuckle under to these God-awful symptoms that plague me and the other part just wants to let go. I'm so afraid of feeling defeated. What to do?
If the key to acceptance is willingness, I'm screwed.
Tuesday, September 14, 2010
THE INVISIBLE WOMAN
I'm smiling.
What else can you see?
Probably nothing.
Because you can't see past it.
I should probably not complain that I'm living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don't usually let people see past the smile because they'll see the real me and I hate appearing weak. I also don't want them to see what I deal with. It's a double edged sword. It's an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it's also invisible because we don't want people to judge us. We get enough of that from doctors, we are afraid we'll also get it from everyone else.
What you don't see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It's a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn't real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it's in bed.
This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I'm not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn't know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.
One of the biggest adjustments I had to make, and I'm still making, is knowing my limitations. I've said it before and I'll say it again. I've never liked limitations. It doesn't matter if it's mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn't be. I've always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn't often, I tend to make the most of it. I know, not good. You'd think I'd be getting the hang of it by now, but I haven't. I still hate what my body has done to me.
I found my voice in blogging which is weird because I'm not real open with people. I've always been outgoing but very few ever got to see the "real" me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn't scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I've left many friends and family by the wayside. I've been able to communicate about the pain and depression. Again many things surprise me. I've also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!
The other adjustment I've had to make is in the area of control. I've always like to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me. So many things haven't been easy and I've had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don't care whether it's physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.
So it's 3 a.m. and it's another night of robbed sleep. I will try to close my eyes but I don't have high hopes. I've taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they're supposed to calm down. I'll end this post and turn off the lights and hope beyond hope for a few hours of sleep.
I really need to learn about limitations
Just don't apply them to speed limits.
This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I'm not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn't know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.
One of the biggest adjustments I had to make, and I'm still making, is knowing my limitations. I've said it before and I'll say it again. I've never liked limitations. It doesn't matter if it's mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn't be. I've always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn't often, I tend to make the most of it. I know, not good. You'd think I'd be getting the hang of it by now, but I haven't. I still hate what my body has done to me.
I found my voice in blogging which is weird because I'm not real open with people. I've always been outgoing but very few ever got to see the "real" me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn't scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I've left many friends and family by the wayside. I've been able to communicate about the pain and depression. Again many things surprise me. I've also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!
The other adjustment I've had to make is in the area of control. I've always like to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me. So many things haven't been easy and I've had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don't care whether it's physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.
So it's 3 a.m. and it's another night of robbed sleep. I will try to close my eyes but I don't have high hopes. I've taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they're supposed to calm down. I'll end this post and turn off the lights and hope beyond hope for a few hours of sleep.
I really need to learn about limitations
Just don't apply them to speed limits.
Thursday, September 9, 2010
HOUSE OF CARDS
When the house you live in is built on chronic pain,
You live in a house of cards.
At any moment, when another card is placed on top,
the whole structure can fall apart.
I never realized I was in the construction business. Sometimes, on a daily basis, I am re-constructing the fragile house of cards that is my emotional make-up. It's a constant struggle to battle the darkness that threatens to envelop me on those days when pain is pushing me over the edge.
How much longer do I have to deal with this?
I want to crawl into bed and put the covers over my head. I'll mindlessly watch movies and do anything I can to distract myself from the pity party I joined. I don't want to think about how much I've lost and I certainly don't want to think about my future. My future that includes a life full of pain.
So I hide.
I have hiding down to an art form.
I feel so emotionally wrung out. The lows come out of nowhere and stay for days. Well, it's lasted for months and just when the fog starts to lift, the pain will start and the cycle begins again.
It is a constant battle and I get so tired of fighting. I'm tired of fighting but what other choice is there? All I will say is that it's better than the alternative. I have to continue so I have come to accept and embrace the darkness as a part of my personality. It's become my friend since the onset of the accident that sent me spiraling into post-traumatic Fibromyalgia.
I think it's natural to go there. How do you not succumb to depression when the pain keeps coming at you and doesn't let up? How do you not surrender to the dark side when this illness strips you of everything that you worked for all of your life? How do you keep the darkness at bay when you have changed so much that you don't even recognize yourself anymore? What do you say when no one else recognizes what you've become either? How do you keep from sinking when doctors and even your closest friends and family think this is all in your head?
What do you do when you hear that you shouldn't get the proper medication because you don't need it? How do you react when your body is screaming in pain and a doctor tells you to just stretch and apply ice? I heard that from a dear friend just the other day. What do you say when the people around you tell you to just get up and move around and then you'll feel better? What do you say in the face of blatant ignorance, gross negligence and insensitivity?
You have the knowledge that if you aren't vigilant the shadows will overpower you. The pain threatens you with the knowledge that it's stronger than you are and it can, at a moments notice, rear it's ugly head and take away your joy. It's the knowledge that you are standing on sinking sand.
Suddenly, without warning, you've overwhelmed by the sheer magnitude of it all.
What do you do?
You crawl into bed and hide.
You hide in the shadows once again.
You cry.
You shut down.
You think you won't be able to take this another day.
But you do.
You keep putting one foot in front of the other and realize that you have no other choice. Even though every step hurts you keep going because underneath it all we still have this small glimmer of hope.
And, most importantly, we still have each other.
Wednesday, September 8, 2010
LIFE IS FRAGILE
In the hustle and bustle of everyday life,
we forget how fragile life is.
In a moment, a twinkling of an eye,
everything can change.
It was Labor Day and in my ever-present fog I had forgotten about a barbecue for a dear member of the family who is moving back to Ohio. I was so tired and I had slept most of the day. Once I had gotten up and looked at my phone I realized that I had totally forgotten it. My daughter had sent me a text message earlier in the day about it and I sent one back that I was just to tired to go.
I called her and then my world suddenly dropped out from beneath me. Her fiance, my dear almost son-in-law, was in the emergency room. It wasn't clear what was wrong but from all indications it looked like he had some kind of stroke or seizure. His speech was slurred and he didn't know where he was and it took quite a few people to get him into the car and to the hospital which, thank goodness, was only a few minutes away.
I flew out the door to the hospital. I was in pain before the call and after the call my whole body was crying out in pain.
I ignored it.
I had to.
Hearing my daughters terrified voice propelled me into action. I couldn't believe what was happening. I can understand it happening to someone older but he's 30 years old and healthy. What the heck was going on?
When I walked into his room he didn't know me and that scared me to my core. I looked at my daughters face and quickly looked away. I'm the only one that just by looking at her can bring her emotions to the forefront and reduce her to tears. I know she didn't want to break down in front of him so I went back to the waiting room. During the next 24 hours he had every test imaginable and they all came back normal. So far, until they get the results of the EEG, he passed everything with flying colors. As of now, he's alert and can remember everything except when the episode occurred.
What it did was put life in perspective. We don't know when our lives can change. Thank goodness, it looks like he's going to be fine and it was some sort of TIA (transient ischemic attack) but it could have gone the other way too. The only thing that matters in this life is the health of the people we love.
We have changed from the people that we were. While not quite on the level of a mini-stroke or something life threatening, what we have is something life changing. It take us from normal, functioning human beings and brings us to people that live our lives at the whim of our bodies. We never know what the day will bring. One day we can be free of pain and then next be down on our knees begging for God to take the pain away. We just never know.
What I do know is that we should embrace every day as a gift, no matter how we feel. Everything we know and have can be changed or taken away in a moments notice. Life is much too short. I will try not to let the stresses of life's circumstances get to me. I will try to remember that however bad I feel, life is still precious. I will try to look up into the heavens and be grateful for each breath.
I will look at my children and smile and always thank God that they are happy and healthy. It's come too close and I was reminded how fragile life can be.
I will never take that for granted again.
Saturday, September 4, 2010
BACK DOWN THE RABBIT HOLE
Every time these flares hit, it gets harder and harder
to recover and bounce back.
This last one has been a doozy.
It starts out as a slight ache in my back. Then it moves to my hands and I notice that I have to rub them more than usual. I started taking Neurontin this week after I told the doctor how difficult it is to put my feet on the ground in the morning. He looked at me and just said:
"Nerve pain, you need to take Neurontin."
"Can I take that with all the other medications that I currently take?"
"No problem, it will probably help you sleep."
Okay, I'm in if it will help me sleep. So far, everything that is supposed to help me sleep works only for a couple of days and then it's back to the same old routine. I fall asleep quickly and stay asleep for a couple of hours. Then I'm awake for a couple of hours. Then I fall asleep again. This goes on until around 5ish. Then I fall asleep until 8. I would just like one night where I sleep through the whole night. I know, I know, I'm a hope freak. What we would all give for a night where we don't have pain and can sleep through the night.
Even as I write this I have to stop because the pain in my hands is over the top tonight. My hands, feet and lower back hurt like hell. Now I've got this pain in my neck and it has a buzzing sound. Great. Just Great. Just one more symptom that has popped up. I also still get a sound in my ears that sounds like static. Why does it seem like the black holes get deeper with each flare? Why does it seem like it's harder to climb out of them? I understand the depression because living every single, solitary day in pain sucks. They say every cloud has a silver lining. It's impossible for me to see that lovely silver lining. Just when I get close, a huge fog bank rolls in. How in the hell are you supposed to find the silver lining through that?
Anyway, back to the Neurontin. I tolerate it well and I do fall asleep but with every passing day it works just a little bit less. The only thing I notice is that I feel a little drugged when I wake up in the morning. Gee, maybe I should just stay in bed! I do get up, though, and go to the gym to walk. I continue to do this because everything I read says that it will help the pain. In my case, the only way it helps the pain is that it makes it worse. A lot worse. I continue to walk hoping that one day it will help the pain like it's supposed to. I walk very slow and I don't overdo it, but my feet still hurt. I tried the gel insoles. Nope. That doesn't help either. So, the walking that is supposed to help, makes the pain in my feet and the rest of my body worse. When will it help reduce the pain, can you tell me?? I've got wonderful gym clothes just for the occasion and the cutest little pedometer you've ever seen! Just don't ask me how many steps I've taken because that would be really embarrassing!
I know that "the group" has had a miserable summer. Everyone is either in one hell of a flare, just got out of one or just started one. Depression is running rampant because this fricking pain just doesn't stop! I know that this summer has been awful for me. What am I talking about? This whole year has been awful! Is the rest of my life going to be like this?
I'm watching Titanic and it's almost over. That's how long it's taken me to get through this post. I've had to stop because it just hurts too much to write. Maybe I should have stopped earlier but I'm tired of not posting because of the pain. It hurts too much to write but it hurts too much not to write. I just hope this makes sense. I tried reading it back but I can't even follow my own words.
I'm tired.
Not sleepy tired but just thoroughly exhausted.
Bone tired.
Now I need to go check on a couple of people that I haven't heard from in awhile.
We all keep tabs on each other because it's real easy to go into hiding.
I've been there once or twice myself.
I can feel it.
I'm going back.
Back down the rabbit hole.
Did any of this make sense???
Labels:
chronic pain,
depression,
fatigue,
fibromyalgia,
insomnia,
sleep disturbance
Subscribe to:
Posts (Atom)